I saw this on Instagram the other day and saved it. The
woman who produced it is fine with it being shared. This is what it was like with Katie when she was growing up. Everything was hard. Even now going out for lunch with her requires a level of alertness that is exhausting. Katie is fine right now but when things go sideways (ovarian cyst, broken arm) everything is much harder to deal with, for her, for me, and for her caregivers. If a drug addict at the mall has a meltdown, it affects Katie. If a child is screaming, it affects Katie. If I'm tired or not feeling well, it affects Katie. If the music or the general mood in the mall is higher, it affects Katie. None of this is her fault, it's just the way it is.
This invites understanding, empathy, and compassion. Great info.
ReplyDeleteIt's good for people to know.
DeleteAgain. I'm so sorry you've had to carry so much of the burden yourself.
ReplyDelete--Cheerful Monk
It's ok, but it's good to know that I wasn't the only one.
DeleteThat is so well done!!!! I don't think anyone can appreciate the high level of alertness and stress that goes into living with a disabled person unless they have experienced it, but this lady certainly hits the nail on the head!
ReplyDeleteShe did an excellent job.
DeleteWhere's number two?
ReplyDeleteOops. It's added now:)
DeleteThank you for sharing this! For all those years you probably never relaxed for a moment.
ReplyDeleteNot when Katie was living at home.
DeleteI think of my two friends who are the parents of a child who has profound autism and how every outing into the world must be planned. This post outlined what I have always sort of known, but not to the degree in which it explains things.
ReplyDeleteEveryone should know and be aware of these things.
It's good info for the world to know.
DeleteIt's difficult to fully comprehend if one has never traveled that road!
ReplyDeleteMy oldest son was ADHD and we all survived, however, he's in his 60s now and he does deal with depression and won't take anything to help him! He works and my daughter in law looks out for/loves him!
He put me through the paces, but nothing even close to what you and Katie have gone through! ❤️
There's knowing and there's living. I'm glad your son has his wife looking out for him and loving him.
DeleteIt's overwhelming to realize what this takes in giving to someone.
ReplyDeleteIt's a lot. It's hard on families, not just the parents but the siblings as well.
DeleteThis is a good description...but I think no. 2 is missing. (Not to add to your workload!)
ReplyDeleteThanks Steve. I've added it now:)
DeleteRaising Emil was not nearly so difficult for me as raising Katie (and spending time with her now) has been for you. Maybe it was a cakewalk in comparison. Even so, there are small details I recognize, like this one: taking forever to do simple things or go places; that's always been a great challenge for me, who moves quickly from A to B and god help you if you slow me down. Fortunately he was my eldest so I didn't know till Everett was about two years old that I was having to work harder with Emil than with fully abled kids. I started counting my lucky stars during rehab after Emil's first tendon-lengthening surgery (he suffered enough to ask why I, Queen of his Universe, was allowing the pain) when he was in the Glenrose in Edmonton and I saw other kids with cerebral palsy, who had it so much more severely than Emil and would never feed themselves, walk, talk, or maybe even be without pain. That's when I embraced gratitude for the shape he was in, in comparison, and while I sometimes grieve for events and situations that will never be part of his life, I know we got off lucky. He's easy. You've been through so much and are still having to cope with rough stuff. There should be a prize for your loving stamina! -Kate
ReplyDeleteI'm lucky with Katie as well. She has no medical issues thankfully, other than normal ones, like a broken arm, or ovarian cysts.
DeleteI'm sure that John's younger daughter--with her very autistic older child, deals with this although she covers it up well. That can't be healthy! The anticipatory stress and added planning make for a HUGE load. Nothing is easy or straightforward.
ReplyDeleteI hope one day John's daughter can accept her daughter's differences. It won't change anything but it might ease the mental load. Who knows?
DeleteYou and Elizabeth have taught me so much about disability parenting on your blogs. Thank you for posting what Special Needs Mom woman shared. Sending love always.
ReplyDelete
DeleteElizabeth has been through the wars. I am a reservist in comparison to her. She is an amazing, strong woman because she's had to be.
Yes, from another parent of a son who looked perfectly normal and wasnt. Yes, every outing planned, ready to ditch if necessary, constant vigilance just to keep him alive. I never had a full uninterrupted night's sleep for the first five years of his life. We all survived, often thanks to other parents in similar situations who were helpful when strangers in public weren't, to put it mildly.
ReplyDeleteThanks so much for showing us this. You've had and continue to have a hard row to hoe. For me it's much easier now, so grateful.
It's the constant vigilance that wears a person out I think. I'm glad things are much easier now:)
DeleteThese digital posters are all good reminders to really think about all of the ways that a person's disability can have an impact on the family. Though there really is no comparison, I was reminded of when I would take students on field trips. I was hyper-vigilant throughout the trip and it was so draining and exhausting. Returning home was always such a relief.
ReplyDeleteI would imagine that losing someone else's child would not be good:) Hyper vigilance is tiring, isn't it?
DeleteThis applies both to Parenting the Disabled and Caregiving the Adults with Disabilities as well. It is a good reminder and gives explanations to people who have not had this Life Experience and therefore don't know everything it entails. Thanks for sharing it.
ReplyDeleteYou have so many years of experience Dawn, not just with children, but with your husband as well. Sending hugs.
Deletethis was fine reading; thank you for posting it.
ReplyDeleteIt's good general information for people to know.
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